Trusting Yourself as a Mother
The news of the day is that we are going to see a new doctor, a Nephrologist this time (assuming they ever call back). No one seems especially concerned about Lizzie’s high blood pressure (except for me, of course) but they all agree that it is reasonable for us to see a nephrologist if we want too.
Reasonable…. yeah, I’d say it’s reasonable. I think it’s reasonable for me to want an explanation of why a child that is not even two, has elevated blood pressure at all, much less with a diastolic reading 25 points higher than my 5 year old son! I think we should at least understand why it’s not concerning. You can’t say hmm that’s high, and then turn around the next week and say, decided it’s nothing to worry about. Easy to say if you’re not the one actually having to worry about it.
Don’t get me wrong, I think it is great that they are not anticipating it will be a problem. That’s great news. The problems is that I just don’t get it, and no one has given me an explanation good enough to diminish MY worry. Our list of “weird & unexplained” things going on with Lizzie just gets longer and longer. Every time we add something to the list, my worry goes up. I just feel like there have to be more answers out there.
So far, she has recurrent UTIs, the enlarged bladder, the failed reimplant, the oddly shaped kidneys, the spleen “bending” one kidney, recurrent low grade fevers, strange poo, complaints that her bottom is hurting, and now high blood pressure. None of which have been truly explained. When and where do you draw the proverbial line? At what point is “we just don’t know” not good enough anymore?
I was so naive in the beginning. I believed that the doctor’s had all the answers. I also believed that when they didn’t, it would be their quest to find them. Man, have I learned the hard way! I’ve discovered that my job as mom includes so much more. I am a mom, a research specialist, an advocate, and a fighter for my daughter’s health, sometimes along with her doctors and sometimes despite them.
I just have this overwhelming feeling that something is not right, and we are just not seeing it. The problem is that I just can’t figure out which part of me is feeling that way. Am I being that crazy, overprotective mom, or am I being an advocate for my child? I never imagined how close the two could come. I feel pretty strongly about my role of advocate, but I have to know that I am advocating for the right thing. Sometimes the line is right there, and it’s easy to know when to cross. For example, when they wanted to give my 5 month old baby the drug Cipro, it was easy for me to jump across. This was not a drug I wanted my infant to take, so I knew I was doing what was best for my child by insisting on another drug that we had used successfully in the past. Unfortunately, it’s not always that easy.
So here we are again. I don’t feel quite right about everything that is going on with Lizzie, but I can’t explain it. I just feel that overwhelming, nervous, pit-of-your-stomach funk that goes along with all the medical mumbo-jumbo. I tend to go with that feeling, but man that is a lot of pressure. To make such big decisions based on my meager research (in comparison to a doctor) and my momma gut. Am I justified in my concern, or am I just paranoid based on past experiences? Both of her current doctors offered a Nephrology referral, but neither think we need it. I, on the other hand, feel like it’s the logical next step – and an important one at that. If we have any question about her bp now, that puts her at a much higher risk later. How am I the only one that sees that?
I trust that her doctor’s have her best interest in mind. I really do believe that, but I have become more of a realist. I realize that they see hundreds of patients, and that they don’t have all the answers. They also don’t have the time to look for them. I am her mother. My job is to make sure that I am doing everything I can to keep her healthy. So yes, I will take your referral, and I will see one more doctor. Do I believe I will get some new revelation and miriad of answers? No, but if I can get one more peice of the puzzle, then I’ve done my job.
Update after the DMSA scan
So, today was the big day. Lizzie finally had her DMSA scan. We got to the hospital around 8:30 this morning, so that they could give her an IV and inject the reacting agent. The test would be 2 hours later. Of course, things were delayed, but by 11:30 we went back for the testing part. The test was supposed to take about 20 minutes, but instead our little angel was strapped to the table for 2.5 hours. I am always amazed at Lizzie’s level of tolerance. She is an absolutely amazing child. For the first 1.5 hours she was perfectly happy. We had an amazing girl from child life services that kept her entertained with books and bubbles, but by hour 2 she was pretty fed up, and who can blame her? She cried hysterically for about 10-15 mins when she finally gave up and went to sleep. I have to say that I was pretty fed up by that point too. We could tell something wasn’t right, but we weren’t sure if it was a problem with the machine or the results. It was nerve wracking.
We went straight from radiology to our urology appointment where we waited for the results. When the doctor walked in he explained that her kidneys looked good. The function is good, and there is not significant scarring. I was so relieved that I almost missed the “but” that followed.
Apparently there was an “issue” with her right kidney. The scan showed that the kidneys were shaped oddly, and that the right kidney had some areas on the scan that did not look like they should. After our appointment, we would be sent back downstairs for a more in depth renal ultrasound to see what was going on. The urologist explained that her spleen might be lying on her kidney, or that part of her kidney might be “dead” or not functioning. Either way, it was not significant in her treatment b/c the kidneys were overall functioning well, but they needed a better picture of what was going on. After it was all said and done, we still don’t really know what is going on, but we do know that her spleen is lying on her kidney and “bending” it, but we don’t think it has any real consequence.
We also did a bladder u/s and found that her bladder is still emptying well, which is great, but unfortunately her blood pressure was much more concerning. This was her third bp reading in the last few months, the first was high, the second high end of normal, and then today it was really high again. So now we realize that we are probably looking at childhood hypertension. We are waiting to see what plan uro wants to take, and in the meantime I will be spending my nights doing research (as usual). I am really hoping it is something we can manage by diet without medicating, but this is one time I will do what the docs suggest without much question. Bp is not something I want to mess around with.
As for her recurrent low grade fevers, he is at a loss, as is everyone else. Could be immunity problems, could be nothing (hey thanks for your opinion!). As for the constant complaining of her bottom hurting, he thinks it is a combination of bladder spasms and constipation. We have been trying to manage her constipation with a high fiber diet, but he feels it is time to be more aggressive and is insisting on a daily laxative or fiber supplement. I’m a little disappointed about this, b/c it feels a little like a mommy failure, but you do what you have to do. We are hoping that if we can eliminate the constipation completely we will have a better picture about the bladder spasms. I am going to work REALLY hard to keep her off Ditropan for the spasms if possible, simply b/c they have caused her such dehydration issues in the past, and my goodness the girl does not need anymore drugs if we can help it!
We’ve been offered referrals to GI, immunology, and looks like Nephrology now, but what she really needs is a nutritionist. I need to find a way to balance her diet to support her little body. Poor thing now has thrush and a vaginal yeast infection, and her little system is just a mess. Somehow we need to balance a no salt, low sugar, low yeast, no processed foods, and high fiber diet and still get her all the nutrients she needs. It’s getting a little too complicated for me to do on my own! 
I’m just not that good.
So overall, today was a long day, but a pretty good day. We know her kidneys are working well, and that is by far the most important thing. We have a lot of other issues to work through, but as long as the kidneys are safe, we have a little time to try and work it out. We need to be in a place where things are balanced before we take the vesicostomy down, but until then we work out the kinks. We don’t know what to expect when the vesicostomy comes down, but if we have a grip on all the other stuff, she has a much better chance at success.
